DNA is the building block of life — it can tell us a lot about both who we are, and who we may become. DNA is also, increasingly, becoming a commodity.
Lots of people have given samples to companies that can tell us where we’re from and whether we have any family we didn’t know about. Researchers find DNA samples helpful in their work studying diseases and potential treatments. But all of this raises a lot of questions, both ethical and otherwise.
Gary Marchant, a professor and director of the Center of Law, Science and Innovation at ASU’s Sandra Day O’Connor College of Law, thinks about those questions a lot and joined The Show to discuss.
Full conversation
MARK BRODIE: Gary, how do you think about our DNA and how we use it, and how we use it in financial ways?
GARY MARCHANT: Yeah, so our DNA is our sort of recipe for our future. Some people call it the diary of your future. It's very personal, obviously, although you share it with family members, which raises a lot of issues, but it's also incredibly important for the future of health care.
And so this is a dilemma that it's very private, very personal, but on the other hand, we need literally hundreds of thousands or millions of samples from individuals to do the types of studies that allow us to do what's called precision or personalized medicine. Which is going to save, you know, millions of lives. And so how do you weigh that and balance those tensions is a big challenge.
BRODIE: Does it seem as though there's any kind of consensus at this point about what the best and maybe most ethical ways to do this are?
MARCHANT: I think most people who are in area understand the potential here and the benefit and that we can all benefit, but the question is, how do you assure people that you can, they can share their DNA safely and not have it come back to hurt them in some way?
BRODIE: Well, so what are some of the ways that researchers are trying to do that? Because for example, you know, a researcher could come to me and say, OK, we need to, you know, swab your cheek or we want, you know, a saliva sample or something. How do I know that that's not going to be used in some way that either I don't approve of, or in a way that might actually be harmful to me?
MARCHANT: Yeah, I mean, so that's one of the challenges and all it takes is a few bad actors once in a while to really undermine confidence in that whole system. One of the key things was, in 2009 we passed a federal statute called the Genetic Information Nondiscrimination Act. So that ensures that your employer and your health insurer can't use your genetic information to discriminate against you.
However, life insurers can, long term disability insurers can. Up until now they haven't been asking for that, but now they're starting to apparently we're starting to get reports of people asking. So now it's a problem if even you know your DNA information that you may be required to share it to get life insurance.
BRODIE: Where do some of those commercial companies like 23andMe or you know, other places where you can find out, you know, where your family is from or find out if you have long lost relatives you didn't know about like where does that fall into all this?
MARCHANT: So they're sort of one of the major places that people interact with. So you can go to a research institute, they're constantly in a hospital. Getting health care, they'll often ask you if you want to donate your DNA to research, but they're one of the largest, like 23andMs has something like 14 million Americans give their DNA, including myself, and they're trying to use that for both, informing you and your risks and, and relatives and heritage and ancestry and all those things, but also using that DNA for research to try to advance genetic medicine.
And so that's again sort of this twofold thing that company, you know, Ancestry.com does have pretty tight controls, but they got hacked a year and a half ago and something like, you know, 5 or 6 million peoples’ samples were stolen. And so that's very dangerous that any time your data is in some database somewhere, if they're not properly secured, somebody who has mischievous or nefarious intentions can steal it.
And that one was sort of really nasty because it seems they were primarily interested in people of certain ethnic groups, Ashkenazi Jews and Chinese people, and, you know, I don't know what they're trying to do with that, but they're apparently they're offering the data now on the black market from those populations.
BRODIE: And it seems, at least in our minds anyway, that, you know, many people have had information stolen, data hacked. It just feels like there might be a little bit of a difference between like your Social Security number or your driver's license number, and your DNA.
MARCHANT: Yeah, well, it depends on, on the individual. So my DNA is, I make it public a lot. I've done like six or seven major tests. I put it on the internet.
There's a thing called the personalized medicine thing out of Harvard that they're encouraging very famous people to make their, their DNA completely available.
And if you have a fairly clean DNA, there's not a lot of really interesting or important genes. We thought there might be, but there's actually just a relatively few number of them that maybe predispose you to Alzheimer's or predispose you to breast cancer. If you have those, you might not want to share that. That could lead to discrimination.
But my DNA fortunately came out pretty clean. Like everybody, I have a lot of variants that could increase my risk, but none of them in a major way. So I just don't see any way someone can use my DNA to hurt me.
Now, if I had one of these really dangerous genes or from a small ethnic group where that could maybe used, to be used to stereotype. If I had a gene that predisposed me to criminality, which there's one of, then it'd be different. But for luckily for me, I'd sort of like the great unwashed masses where my DNA isn't that interesting.
BRODIE: But the problem, I would imagine, is that you don't necessarily know that until you get the results, right?
MARCHANT: Yes, exactly. And it can show up a big surprise.
BRODIE: Yeah. So what was your thought process when you signed up for 23andMe or did any of those other, any other tests.
MARCHANT: I'm, I'm a geneticist by training. I did genetics. I was a genetics PhD before I went to law school and so I really believe in the power and the potential of genetic medicine to really improve our health care. Our health care is really inexact today because we are all different in how we respond to medicines and our risks of different diseases, and if we can tailor our treatments to us, I know it's going to save a lot of lives.
So I've always known that. And believed in that. And so I was quite willing to have my DNA shared and used for research. But when you start hearing about these hacks or people selling it, perhaps for marketing and other reasons, it does create some concerns.
BRODIE: Are there situations in which companies or researchers or other entities are paying people for their DNA?
MARCHANT: No, it's sort of the opposite, you know, so I, I was one of the early adopters at 23andMe. I think I paid $500. I paid $500 to give them my for the privilege of giving them my DNA.
And then on average, they then sold that DNA. I gave them permission to do it, to do research, and they've sold it to drug companies for, it's estimated average person's DNA for $18,000. So I sort of feel bad I had to pay to give them my DNA that they, they turned around and sold, but no one's paying for DNA right now.
BRODIE: Is that something that you could see down the road?
MARCHANT: Maybe, except the problem is in these studies you need hundreds of thousands of people. So you know, if even if you paid, you know, $5, you're in the millions of dollars. And research is incredibly expensive already A lot of the research can't afford to go forward right now because it is so expensive and now we're cutting, you know, indirects research grants and so on.
So it's very difficult to make this research go forward and to put on a cost of charging, paying for each DNA sample when you're using hundreds of thousands of them would just be, I think, impractical.
BRODIE: And Gary, I just for some people you talk about certain groups of people, a lot of marginalized communities, for example, are seen as having DNA that is potentially valuable for research. I wonder if that might incentivize in some way people to offer their DNA, but also potentially lead to some more ethical questions about paying for something like your DNA.
MARCHANT: Yeah, I mean, it raises a lot of issues. One of the things I was hopeful of and may still work is the idea of putting your DNA on a blockchain, and then drug companies and other researchers would actually pay to the blockchain, and you as a owner of that DNA would get a cut of that for using your DNA and research.
Now that I gave my DNA to a company to do that. They haven't put it on a blockchain yet, so I've gotten no returns, and I think several companies have tried this model and nothing's really worked yet, but that could be a model for the future where the people who donate the DNA would actually get part of the payment for the DNA.
BRODIE: That's a really interesting concept. And it just seems like, you know, again, you know, we talked about, you know, if you did this, a lot of people paid 23andMe or Ancestry.com, these companies to find out interesting information, but if I wonder if you're just, and I say just because the the return to the individual might not be seen for a long time, if ever, if you're giving your DNA for drug research, for example, like I wonder if more people would be would be willing to do it and maybe take on that risk if they got some amount of money or something tangible in return.
MARCHANT: Yeah, I think it would certainly, we know from basic economics that that's a fact that if you get some kind of reward, you're more likely to do that. All these companies who market different things and give you points and things like that are very aware of that.
So the DNA industry maybe needs to get more sophisticated in their marketing.
BRODIE: In your mind, sort of on a philosophical, maybe ethical level, do companies and researchers maybe need to think about DNA and how they acquire it differently than how they acquire different things or maybe how a credit card company incentivizes people to to spend money on that credit card or something like that?
MARCHANT: My sense is that the companies and researchers in this field are very aware and sensitive to this. They know the power of the DNA and they, they do try to protect it. It's just that there's no such thing as perfect security of data these days.
You know, I think there's been a sense that this stuff is very precious and very personal, and we need to protect it, but it's, there's never going to be a perfect protection.
BRODIE: What do you think the future looks like in this field?
MARCHANT: Yeah I think, you know, in the future, it's quite possible that people will be, when they're born, will be given a disk with their entire genome sequence on it. The cost of sequencing your entire genome has come down from $1,000 to several hundred [dollars] now.
I've had my whole genome sequence four times now and you know, you can then use that for all kinds of things later in your life for drugs, for example, almost most drugs work better or or less better for different genotypes. You can now just look at your chip and determine, what is the right dose of this drug or should I take that drug at all?
Drug side effects kill over 100,000 people a year, many of them because you have the wrong genotype for that drug dose. So we could be saving a lot of lives if we had that genome and not have to pay several $1000 to get it tested each time we're getting a drug prescription or something.
If we just have that once for several hundred dollars and just use it throughout our lifetimes, I think that'll be the future. But of course we have to assure people that that won't be used against them, that insurers won't use it, that employers won't use it, and other people won't use it to harm you. And so that's really important to build up those legal protections.
BRODIE: Well, that kind of raises, you know, sort of that age-old question, you know, you ask the teenager or the, you know, young adult, if you could know that at 70 years old you're going to have X disease, would you want to know? And if you did know, would it change the way you lived your life? It sounds like this is in your visioning of the future, that's a question that we're all I have to really seriously consider.
MARCHANT: Yes, and people really differ on that. I've, I, several years ago, 23andMe offered to test my entire genetics and law class and 50 something students got tested. And what was remarkable is a diverse response that people had to finding out certain risks they had.
Some people were glad to know it because it, it occurred to them at the moment they were conceived, and they can now be aware of it and try to prevent it. Other people feel guilty, feel stressed, or worry about their parents who gave them the gene, worry about their kids in the future, or receive that gene.
So it's so interesting to see how diverse people are and how they respond to this information about their future risks.
BRODIE: So in the scenario you outlined where, you know, you'd be given, you know, a disk or a thumb drive or something with your genetic sequence on it, in that kind of situation, could I, if I had that, take it for example, to my physician and say, he says, “OK, you have high blood pressure, you have, you know, our tests show that you have this. Let me see your genetic sequence. Let me see your genome, and we can figure out what medication might work best.”
Iif I, you know, for people who have to have surgery, you give it to the, to the hospital so they can make sure there are no other risk factors. Is that kind of what you're talking about?
MARCHANT: That’s exactly right. And, and that could be incredibly helpful because first of all, a lot of drugs don't work for certain patients because they have the wrong genotype. You know, no drug really works in more about half the patients it's given to some, some considerably less.
And then secondly, there's incredible toxicity from drugs. Drugs are messing your body up to do a good thing, we hope, but for a lot of people because of the genotype you have, they can cause toxicity and death. And so it, it hospitalized over 2 million people a year from drug side effects, kills over 100,000 people.
Much of that could be prevented if the doctor could just look on your disc, your record and see which gene variants you have and determine and they'll just pop up on the screen, you know, what dose of the drug or what drug they should do for you and some of the top hospitals are now already doing that.
BRODIE: I can imagine that there would be people who would look at this and say you're basically predetermining somebody's life by having this information, like a physician from a very young age could say, “OK, this person is predisposed to some kind of addiction. This person is predisposed to criminal activity. This person is going to have dementia when they're older.”
And almost figure out from when a person is, you know, maybe like a year old, what the rest of their life is gonna look like.
MARCHANT: That's very, very true. It's sort of a future diary, of course, environment plays a big role as well, but I think we have to give people the choice of what information they want. There's a, a project, for example, that's sequencing the entire genome of new babies, and they give the parents a choice of what kind of information they want about their child.
Is it just drug side effects and drug effectiveness, or do you want to know disease risk? Do you want to know some of these social risk factors? So I think people should have the choice of what information they want from their genome.
If you're like me and you want it all, you can have it. If you only want very narrow stuff that can basically save your life when you get prescribed a drug, you can have that. And more importantly, that you get to control who else gets to see it.
